 |
|
 |
     |
  |
Welcome to ISONG's Support Group PageThe decoding of the human genome is causing a myriad of changes in the way we think about health and illness. Individuals, families and health care providers are being bombarded with news of genetic and genomic advances at every turn. Huge amounts of information and invitations for testing are available directly to the consumer on the world wide web. For families who have a child or other family member with a genetic disease or are at risk for a genetic disease that may be incurable, the psychosocial and financial consequences can be significant. Despite the passage of the Genetic Information Non-discrimination Act [GINA] in 2008, which prohibits refusal of insurance or discriminatory use of genetic information, issues about confidentiality and discrimination still exist. Survivor and transmitter guilt have been described in the professional literature and anecdotally. Individuals and families may be in need and may benefit from a support group. The ANA/ISONG Statement of Scope and Standards of Genetic Clinical Practice is a recommended resource for all nurses integrating genetic health care as part of their practice.In order to refer a patient or client to a support group, it is helpful first to do an assessment to find out what exists in your geographic area. Do you think your patient or client will benefit more from a professional led or a lay led support group? You can contact the Alliance of Genetic Support Groups, a coalition of voluntary organizations and professionals that serves as a bridge between consumers and service providers. Free membership is available to this organization. The Alliance is a good place to start in your quest for support group information. Other resources include the National Organization for Rare Disorders [NORD] and the National Human Genome Research Institute. Once a possible support group is identified, it is helpful to call or email them to determine how your patient or client can become part of that group. Other information to seek about a group includes how the group functions, how often and where does it meet, is this really the right fit for your patient or client, and whether or not there is a fee to join. If there are no appropriate support groups near you, contact the nearest group and inquire as to how you might proceed to meet your patient or client's need in your area. There may be another professional in your area who can assist with either a referral or starting a new group. If you know an advanced practice nurse in psychiatric mental health in your community, s/he might also provide consultation. Once the assessment homework is completed, you are ready to refer your patient or client to an appropriate support group. Six 'rules' to remember when referring a patient or client to a support group are:
Remember that the role of the nurse is extremely important!
Sarah Cook, DNP, RN-CS Last edited: 05/22/09
Copyright © 2010, ISONG |